Tag Archives | Hereditary Angioedema

HAEi- Bringing International to HAE

As Canadians living with hereditary angioedema we often feel quite isolated, not only in our own communities, but internationally. As a relatively young country with a large but spread-out population, we often hear tales from across the seas of how HAE is being handled in other countries, their advanced treatments and resources. Even more often […]

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Rare Diseases Without Borders – Answering TTP (Part 1)

Alone we are rare, together we are strong. Tomorrow is the 6th annual Rare Disease Day! Every year on the last day in February, countries from around the world come together to raise awareness about rare diseases. But beyond raising awareness, Rare Disease Day also marks an opportunity for people within the rare disease community […]

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The First Global Guideline for the Management of HAE

On December 5th, 2012 the World Allergy Organization (WAO) HAE International Alliance published in the World Allergy Journal, the first global guideline for the management of HAE (full article here: WAO Management of Hereditary Angioedema). At the consensus conference held in Gargnano del Garda, Italy, from September 26 to 29, 2010,  58 experienced HAE expert physicians from […]

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Cinryze Comes to Canada

Cinryze Comes to Canada On January 25, 2013, HAE Canada received word from Canadian Blood Services (CBS) that, effective April 1, 2013, they will be adding a second supplier of C1 esterase inhibitor to their portfolio. Viropharma’s C1 esterase inhibitor product, Cinryze, has been given a five year contract with CBS, who will officially cover […]

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Emotional Impact: Diagnosis of HAE

By Guest Blogger: Kristy Brosz (MSW, RSW) The road to a diagnosis of HAE can be long, often containing many twists and turns. Given the rarity of HAE and the large range of presenting clinical symptoms, it can take some patients a decade or more to obtain an accurate HAE diagnosis.

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Vancouver HAE Update: Review

On November 15th, ten patients and family members gathered together with five BC physicians at the Steamworks Brewpub in Vancouver to discuss hereditary angioedema, ask their questions, and listen to guest speaker Dr. Amin Kanani. For some of the patient’s it was the their first time meeting another patient and it helped everyone realize the […]

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Presentations for Download from the 2012 Patient Summit

This year HAE Canada held the first ever Canadian national summit for hereditary angioedema patients. We had several fabulous presenters from across Canada, who spoke on many interesting topics. If you didn’t get the chance to attend in person, or just want to revisit the information, we have gathered several of the speaker’s presentations here […]

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Orphanet-Canada & The New Framework Explained

At the beginning of this week HAE Canada wrote a letter to the Canadian Minister of Health, thanking the Honourable Leona Aglukkaq for recent initiatives that have been introduced in Canada. So what’s it all about? Well, recently Canada has done two pretty exciting things. Let’s talk about each of them individually… 1. The first […]

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